Six months later

Exactly six months after Rowan was killed, Rowan should have attended his first day of preschool.

The other day at dinner, Rowan’s sister started a familiar conversation:

Mommy, why did Rowan die?

“The doctors gave Rowan a medicine called anesthesia. Anesthesia usually makes people fall asleep, and then they wake up. But Rowan’s heart was different than ours, and he couldn’t have anesthesia. So the anesthesia made his heart stop working and he died.”“Why couldn’t Rowan have anesthesia?”
“Because everyone is different. Just like your friend Molly can’t eat nuts. So we have to be careful because if we gave her nuts she might die. Rowan’s heart was built differently than ours, so he couldn’t have anesthesia. We don’t know exactly why. But we do know the doctors weren’t careful and gave it to him anyway, and he died.
You can eat nuts and you can have anesthesia, but everyone is different and there are certain things each person can’t have.”“Why did they give him (anesthesia)?”
“I don’t know. Because they didn’t pay attention. They should have listened and should have known that he couldn’t have anesthesia without being very careful, but they didn’t.”“If Rowan’s doctor didn’t make a mistake, would he have died?”
“No.”
This conversation could take place at any table. A child does not have to have special needs to be a victim of a doctor’s hubris, it can happen to a typical child as well. Your child.

In the last six months..

We have worked to hold onto memories of Rowan, saving every last drawing, every last item, every last picture of Rowan’s. We talk about him, and share our memories. We try to hold onto the dream that was once our reality.

We have tried to find peace in knowing that our story has spread around the world, and made a difference for the many people and families who have read it.

We have worked to plant Rowan’s tree, so that our daughter will having something living to remember him. We have made him a part of our daily life, in his absence.

We have learned, with much help, exactly why and how Rowan was killed, and who played each role in his death. With this knowledge, we now begin to heal.

We have tried to carry on Rowan’s lesson of embracing goodness and kindness, and tried to see in the world around us as he did.

We have become friends with strangers, and strengthened friendships beyond what we ever imagined.

We have received a tremendous amount of help from those we hardly know, who have given freely without expectation.

We have become a part of a community of Williams Syndrome parents who have shared their stories, and exposed their hearts. For these things, we are forever grateful.

But..

We have lost friends, and had others turn away to shield themselves from our grief.

We have tried to talk to Rowan’s doctors, his hospital, and the institutes that oversee them. We have received no reply. We have tried to get the information that exists about our own son. We have been turned away. We have tried to obtain an external review of Rowan’s case, which was promised to us. We have been ignored. Instead, we receive bills for the anesthesia that killed him. Instead, we hear about how Rowan’s doctors remain lauded with praise from their peers, and Rady Children’s Hospital remains one of the highest ranked pediatric heart centers in the nation.

We have tried to talk to the executive director of the Williams Syndrome Association. She, too, has met any criticism with silence. Instead, Terry Monkaba states widely that “The WSA wants to provide as much information as possible to all WS families.” At the same time, we receive stories from the very families who reached out to her to change the anesthetic risk information spread by the WSA, and were ignored. She also gives credit to the Williams Syndrome Association’s medical team and “esteemed cardiac anesthesiologist with a great deal of WS experience” (RT Collins) for the WSA website’s updated information, credit to the very doctors who withheld necessary information from our community, and widely spread false information. It was very difficult for us to realize that this group, which is very helpful and supportive of the Williams Syndrome community in many ways, also contributed to something terrible.

We have heard from many families. Families who have tried to talk to their doctors about the anesthetic risk associated with Williams Syndrome, and been ignored. Families who have suffered tragic experiences and great losses, and were ignored by the Williams Syndrome Association when they tried to make a change. Families who have gone to doctors with research and concerns, and had doctors proceed without precautions. Families who want to be informed advocates for their children, just like we did.

And we have cried, and continue to do so, many times each day.

We continue to hope that our website spreads awareness among families and doctors. But in the end we are left empty-handed and empty-heartened, with the knowledge that Rowan’s death should not have been necessary for anesthetic risk to be taken seriously.
We hope to continue to remember Rowan through our lives. We hope to begin healing, and begin concentrating on his life. Someday, when we find the strength, we hope to share his joys by building a foundation. Maybe it will be to share music and art with children in need. Time will tell.With Rowan in our hearts..

Rowan was killed at a renowned children’s hospital as a direct result of the careless and unnecessary use of general anesthesia for a “routine” outpatient diagnostic procedure .. against his mother’s wishes.

Want to help make a difference? Visit How To Take Action to speak out against medical negligence and special needs discrimination in healthcare.
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